Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.

Autor:	Domaradzki J; Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Poznań, Poland., Czekajewska J; Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Poznań, Poland., Walkowiak D; Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.
Jazyk:	angličtina
Zdroj:	The oncologist [Oncologist] 2024 Jul 05; Vol. 29 (7), pp. e887-e898.
DOI:	10.1093/oncolo/oyae078
Abstrakt:	Background: Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. Materials and Methods: To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. Results: While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. Conclusions: Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns. (© The Author(s) 2024. Published by Oxford University Press.)
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu